Any experiences of Jaw replacement?

claire33

Hi all,
I'm 35 and last year I was finally sent to a Max fax doc regarding my jaw problems. I had trouble talking and eating and could only open my mouth 3 cms. I'd been complaining to the rheummy's for years, but it was ignored. It turned out that the damage caused by my RA was very severe in my jaw joint and after an unsucessful arthrocentesis, I am now being referred to Birmingham to discuss a jaw replacement.
This prospect is very worrying and I have no-one around me who understands my fears. Can anyone help me?

claire

dorcas

Hi Claire

Sorry I have no experience of this op but have had flare ups of arther in my jaw (no where near what you're experiencing)

It must be a worry and it can be very isolating when you feel that there is no one you can turn to....and I'm so sorry your rheummy's ignored what you were feeling and left you with such pain for so long........there's no excuse for that!

Just wanted to send you lots of ((((hugs)))) and to let you know we are here for you and always ready to listen and give you support ...

hope someone else here can help you with information on this op.
take care and try to stay strong... Iris x

woodbon

Hello,
It must be hard not to be able to talk to anyone close to you about your worries and fears. Do you have a sympothetic GP or practice/rhuemmy nurse? It not, and you want someone to talk to try the Helpline number, in the right hand coner of the screen. They are very good and can often send leaflets to help you, or just be their to listen.

I hope you don't have to wait too long for an appointment, waiting is often the worst part.

I won't say what i think my husband would say to me if I told him I needed a jaw replacement, but I can imagine and its not very complimentry!!!

Lots of love Sue xxx PS Love your Avatar!

speedalong

Hi Claire,
I didn't even know there was such a thing. Makes a THR sound positively boring! However, you can't go on as you are - being able to open your jaw only 3cm sounds a n'mare. Try and focus on the fact that at last you are being referred to someone who can help. They must be referring you to Birmingham because that is where they specialise in this procedure. Start writing down all you questions as they pop into your head ready for your appointment so that you can ask away when you get your consultation through.

Keep us posted.

Some people find researching helps them - knowledge demystifyies the treatment for them - others prefer not to know too much.

Read some of the posts on other types of replacements - they all seem to be positive and peeps seem glad they went through with the op.

Speedalong

claire33

Thanks to all of you for your kind thoughts and support. I know we all have very different experiences of our arthritis. Unfortunately I haven't been able to find much info on jaw replacement on-line so I'm still in the dark about it. :?
I will try to keep positive about it, but I think we all know how hard that can be.

dopeykit

Hi Claire,

I'm so sorry to hear you are having such a horrible time with the arthritis.

I also have arthur in the jaw from PsA and am 27. I'm seeing the surgeon but I want to keep trying more conservative measures as like you the idea of a replacement scares me stupid. I'm particularly worried about my face and whether it will be affected.

It is an absolute pain in the bum isnt it? I cant open it properly, talk for long periods or chew and it makes a funny noise like rice in a jar when I open it. Sooo bored of eating mush too.

I did a bit of googling about jaw surgery and this was the best link I found http://www.oxfordradcliffe.nhs.uk/forpatients/090427patientinfoleaflets/090428jawsurgery.pdf

You could also try phoning PALS at the hospital and ask them to help you get more information.

I really hope you feel a bit better and hang on in there. Thinking of you
Kit

frogmorton

Hi Claire

Poor you

I have had trouble with my jaw too and it got stuck shut this january :shock: In fact I couldnt swallow too well either and dribbled :oops: The pain was dreadful

I have been very lucky and its gone away for now.

I can so understand hwo you feel and the worry because I did think about it at its worst. My rheumy said it was arthur straight away at least, but all is well at the mo.

There have been others with this prob, but i dont know anyone who has had a replacement.

Sorry to be so little help,but I would be very interested to hear how you go on - if you dont mind sharing it?

Take care

Love

Toni xx

snowball

Hi Claire sorry you are having problems with your jaw, I have r/a in my jaw too and have trouble chewing, why don't you post your question on the help line they might be able to help you.

Take care Julie

elnafinn

Hi Claire

I am so sorry to read about your jaw problems. I would be very angry and upset with my rheumy if it had been me. I presume that Birmingham is the place to go for this kind of specialist help for you. Bless you, I understand your fears only too well. Who do not understand how you feel? Do you mean your friends and family? I wish I could help you. Let's hope that when you get your appointment they take you under their wing and help and assure you as much as possible. It would be a good idea to call the helpline, they may well be able to give you some guidance and make you feel a little better and not so alone with it all. They are lovely, kind people, and many have been helped by them and they are good listeners too.

Let's hope someone calls in who has some information for you.

Luv
Elna x

claire33

Hi Kit,
thanks for the support and the link, but it didn't really give me the technical info I wanted.
I am most concerned with sucess rates and all the problems. I just don't know if I've got the guts to go through a procedure like that. I'll perhaps settle for ventriloquism and sucking soup through a straw!! You probably know how it is!!
I don't feel so isolated since I posted on here!!

Claire !!

claire33

frogmorton wrote:

Hi Claire

Poor you

I have had trouble with my jaw too and it got stuck shut this january :shock: In fact I couldnt swallow too well either and dribbled :oops: The pain was dreadful

I have been very lucky and its gone away for now.

I can so understand hwo you feel and the worry because I did think about it at its worst. My rheumy said it was arthur straight away at least, but all is well at the mo.

There have been others with this prob, but i dont know anyone who has had a replacement.

Sorry to be so little help,but I would be very interested to hear how you go on - if you dont mind sharing it?

Take care

Love

Toni xx

Hi Toni,
Thanks for the support, I'm so glad I'm not the only one struggling on here. I'm going to research it before I see the docs and I will keep anyone interested informed. I feel a bit better now I've been on here and talked to people who know what its about!

claire

sanmar63

claire33 wrote:

Hi all,
I'm 35 and last year I was finally sent to a Max fax doc regarding my jaw problems. I had trouble talking and eating and could only open my mouth 3 cms. I'd been complaining to the rheummy's for years, but it was ignored. It turned out that the damage caused by my RA was very severe in my jaw joint and after an unsucessful arthrocentesis, I am now being referred to Birmingham to discuss a jaw replacement.
This prospect is very worrying and I have no-one around me who understands my fears. Can anyone help me?

claire

OMG!! Thought I was the only person in the world that cant open jaw more than 2cm's because of RA! Bless you Claire, I know how awkward/painful and embarrassing it can be!
Please, please, if you discover anything about the op, would you let me know? Love and best wishes, Sandra xxx

trisher

claire33 wrote:

Hi all,
I'm 35 and last year I was finally sent to a Max fax doc regarding my jaw problems. I had trouble talking and eating and could only open my mouth 3 cms. I'd been complaining to the rheummy's for years, but it was ignored. It turned out that the damage caused by my RA was very severe in my jaw joint and after an unsucessful arthrocentesis, I am now being referred to Birmingham to discuss a jaw replacement.
This prospect is very worrying and I have no-one around me who understands my fears. Can anyone help me?

claire

Hi Claire

Sorry to hear about you and your jaw.

When you go to see them, you can ask if there is anyone who has had this op that you could talk to.

They may already have a person who has gone through this procedure who councils patients who are waiting to have the op.

Please ask them, they will understand you being worried about going into the unknown and put you in touch with them.

In the meanwhile a gentle ((((())) for you

love Trish xx

claire33

Hi Sandra

I'm sorry to hear you're in the same boat. I will definitely keep you informed about my treatment. Until my x-rays showed that my jaw joint had worn flat I had no idea that you could get RA in the jaw, let alone how bad it had become. Have your docs suggested any kind of treatment?

Take care
Claire xx

sanmar63 wrote:

claire33 wrote:

Hi all,
I'm 35 and last year I was finally sent to a Max fax doc regarding my jaw problems. I had trouble talking and eating and could only open my mouth 3 cms. I'd been complaining to the rheummy's for years, but it was ignored. It turned out that the damage caused by my RA was very severe in my jaw joint and after an unsucessful arthrocentesis, I am now being referred to Birmingham to discuss a jaw replacement.
This prospect is very worrying and I have no-one around me who understands my fears. Can anyone help me?

claire

OMG!! Thought I was the only person in the world that cant open jaw more than 2cm's because of RA! Bless you Claire, I know how awkward/painful and embarrassing it can be!
Please, please, if you discover anything about the op, would you let me know? Love and best wishes, Sandra xxx

claire33

Hi Trish
Thanks for your advice, It was something I hadn't really thought about. My max fax doc thinks they may do around 2 procedures a year so hopefully there are others like me

Thanks again
claire xx

trisher wrote:

claire33 wrote:

Hi all,
I'm 35 and last year I was finally sent to a Max fax doc regarding my jaw problems. I had trouble talking and eating and could only open my mouth 3 cms. I'd been complaining to the rheummy's for years, but it was ignored. It turned out that the damage caused by my RA was very severe in my jaw joint and after an unsucessful arthrocentesis, I am now being referred to Birmingham to discuss a jaw replacement.
This prospect is very worrying and I have no-one around me who understands my fears. Can anyone help me?

claire

Hi Claire

Sorry to hear about you and your jaw.

When you go to see them, you can ask if there is anyone who has had this op that you could talk to.

They may already have a person who has gone through this procedure who councils patients who are waiting to have the op.

Please ask them, they will understand you being worried about going into the unknown and put you in touch with them.

In the meanwhile a gentle ((((())) for you

love Trish xx